Hi my husband George was diagnosed with DLBCL in April and he has now finished his treatment, he has taken it in his stride, he had his final scan this week and we are now waiting on the results, his halfway scan was good, consultant was pleased so hope we get good news soon.
But now I'm a nervous wreck, waking up in the middle of the night wondering "what if this" "what if that" can't concentrate on anything, I was not like this during his treatment, it's like it's real now and sometimes I feel like having a good cry but can't, he doesn't know that I'm like this as he has enough on his plate, I try to keep a good face on but it's hard sometimes. I've prayed like I've never prayed before so hope someone up there is listening.
Thanks for listening to me and I hope you all get good news soon, will let you know when we get results.
Hibbie
Hi again Hibbie and MLW....... The post treatment waiting for results or impending check-up appointments can be hard especially in the early days/months/years....... but things will improve.
The thing you will have to develop is the acceptance that no amount of worry will make any difference to what is actually said....... When it comes to DLBCL the aim is to treat to cure and this is the most important thought you need to keep in mind.
Yes the reality is that some folks do need extra treatments to consolidate but on the whole most don't.
As you know I have a different type of NHL...... incurable but treatable. Within the first few years I gave up looking for, or even believing for long term remission as the longest period of time I had between treatments was about 9 months....... but fast forward over those 16 years of treatments....... and I now find myself into my 6th year in remission and living the dream....... so this can be done.
My amazing Specialist Cancer Nurse of many years told me something very helpful early on…… The ‘cancer anxiety train’ is always sitting in the station....... but we can only get on it if we go to the ticket office and get a ticket....... don’t go in the queue and get a ticket.
Let's look for good soon Hibbie and a good next appointment MLW ((Hugs)) all round.
I found this great article a few years back and I often post it especially to those who are just starting the post treatment journey.
What Is Scanxiety and How Can You Manage It?……. Choose Hope
The first time you read or hear it, “scanxiety” may look and sound like a funny word. However, when you are going through it, there is nothing funny about this very real condition. From the first MRI following a doctor’s suspicious discovery during a routine exam to the annual PET scan years after an initial diagnosis, the fear and worry that accompanies imaging appointments can take a significant toll on your emotional and mental wellbeing.
Fortunately, you can take steps to minimise and cope with the sometimes-overwhelming emotions you feel.
Acknowledge your Feelings
Don’t try to ignore the way you feel, as this can actually increase your anxiety. Instead, recognise and even embrace your scanxiety. This first step empowers you to take action, move forward and manage your emotions, helping you find peace and feel more in control of your own life.
Talk about It to the Right People
Venting your fears and frustrations to people close to you can be a wonderful way to release stress and gain vital support. However, if you have folks in your life who tend to exacerbate your worries or load you up with even more concerns (and really, who doesn’t have that one friend or family member?), avoid sharing too much with them.
Practice Mindful Living
Ancient Chinese philosopher Lao Tzu said, “If you are depressed you are living in the past. If you are anxious you are living in the future. If you are at peace you are living in the present.” Look for ways to live in the moment. Hug your little boy and inhale deeply, noting the mingled fragrance of fresh earth and shampoo. Stroke your husband’s face and think about the way his soft stubble brushes your hand. Savour a particularly flavourful meal. Relish in the here and now.
Distract Yourself
Find ways to take your mind off the upcoming scan, at least for a while. Dig into a novel or binge watch a series that completely engrosses you. Turn up your favourite music and tackle a chore you’ve been putting off for too long. Hang out with that one friend who has a gift for making you laugh. Schedule some time to enjoy your favourite hobby without interruption. If you have trouble letting go, imagine setting your worries in a “to do later” box and tell yourself you can pick them up when you’re done.
Ask Questions
Sometimes, the unknown is the greatest instigator of anxiety. If you are unclear about anything – from what to expect during the scan, to when and how you can expect to receive your results, to what those results might mean - don’t be afraid to ask your doctor. Having a well-defined understanding of what you will or might experience allows you to be better prepared and can even ease your mind.
Plan for the Worst Outcome…
Along with knowing what could possibly come of your scan, creating a strategy for the worst case scenario can improve your sense of control. By no means should this be perceived as giving up or being resigning yourself to bad news. Cancer can make you feel powerless, but creating a basic action plan just in case can help you regain your power as well as your optimism.
…but Visualise the Best
Your mind is more powerful than you might realise. Visualisation and guided imagery have been shown to improve your mood, control symptoms or side effects and even boost your immune system. Imagine yourself receiving great news after your scan. Allow yourself to experience the feelings of relief, gratitude and elation. Think about these things as though you are remembering them. Seeing it in your mind’s eye can give you the encouragement you need to overcome your scanxiety.
